Alzheimer's blog

Antipsychotics overused in people with Alzheimer's

I'd like to conclude this series of postings around the unmet needs of persons with dementia by sharing with you a blog written by Dr. Cheryl Phillips. Dr. Phillips is a geriatrician I met in Washington, D.C., a short while back at a gathering to discuss non-pharmacological interventions in caring for persons with dementia. She writes about an all too common way that behaviors in dementia have been addressed — drugs.

Federal officials are working to place compassion at the center of how our nation aims to treat elderly patients suffering from dementia.

The Centers for Medicare & Medicaid Services (CMS) has announced that they'll coordinate an effort to dramatically reduce the use of antipsychotic drugs among dementia patients in nursing homes.

The agency's plan acknowledges that these powerful pharmaceuticals are often overused — and represents a valuable first step toward improving the way we treat people with this condition.

But government alone shouldn't dictate how we deal with dementia. Families and caregivers must also recognize when medication is appropriate — and when it's not.

More than five million Americans are afflicted with Alzheimer's and related dementias. Coping with a loved one suffering from the disease is an immensely trying experience — one that can leave even the most stoic among us desperate to try anything to alleviate a family member's suffering.

It's no surprise, then, that nearly 40 percent of dementia patients living in nursing homes receive antipsychotic drugs. Overall, some 14 percent of nursing home patients are on antipsychotics. These are alarmingly high numbers, given how ineffective — or even dangerous — the drugs can be.

For starters, antipsychotics have not been approved by the federal Food and Drug Administration to treat dementia. No drugs have. Only about 20 to 30 percent of elderly dementia patients who take an antipsychotic drug show even marginal improvement.

For such unimpressive results, the potential harms are significant. For every 53 patients treated with such a pharmaceutical, one will die. And for every nine to 25 patients that benefit from an antipsychotic, one will die.

As a result, the FDA has issued a rare "Black Box Warning" stating that patients administered the drugs face a risk of death 1.6 to 1.7 times greater than those who take a placebo.

And yet, a blind faith in the effectiveness of antipsychotics that's not borne out by the science remains. Abandoning this belief is a necessary first step toward improving the way we treat dementia — and saving lives. To do so, we must first change the way we think about the illness.

Many view dementia as the cause of a number of behaviors that need to be corrected or controlled. This misconception fits our cultural penchant for pills quite nicely. For instance, Grandpa George's loud incoherence or Aunt Esther's refusal to calm down are symptoms that need to be alleviated through medicine — or so the thinking goes.

But folks displaying the disruptive behaviors associated with dementia are more often trying to communicate with those around them. Their "acting out" signifies their frustration at their inability to do so.

Consequently, people interacting with them — whether family members or professional caretakers — ought to try first to understand what the patient is trying to convey. Then, they can take appropriate action.

For instance, yelling, wandering, or resisting care are not symptoms of psychosis and will not be resolved through the use of antipsychotics or other medications.

But if a drug is judged necessary, keeping close tabs on it is imperative. A checklist can be helpful. Is the person showing signs of improvement? Are they better able to engage with others and with their surrounding? Can that individual get by on a lower dose? Is the medication even working at all?

All too often, families and caregivers fail to ask these questions. That's a mistake. Given the risks associated with antipsychotics, determining how to address dementia-fueled behaviors without drugs is vital.

Fortunately, there's a growing body of evidence that supports the effectiveness of behavioral modifications and non-pharmacological interventions to treat dementia.

This new approach isn't just something for nursing home staffers or professional caregivers to consider — it's important for us all. Odds are that we all know someone who suffers from the condition — or someday will. Decisions about their potential paths of treatment may fall to us.

CMS is right to try to reduce the use of dangerous antipsychotics in dementia patients. But it will not succeed without a shift in the way we all think about this debilitating condition.

(Dr. Cheryl Phillips is a geriatrician and senior vice president of LeadingAge. See www.leadingage.org.)

My husband who was diagnosed at 58 with alzheimers was placed in a nursing home for respite care, He had never been aggressive but even before he was diagnosed he never liked changes of any kind. He was diagnosed in 2008. He was in respite care less then 24 hours and they said he was aggressive and medicated him with Ativan. He did not calm down so they called me and I took him to the VA hospital. The reason he was in the nursing home for respite was because my mom was dying. To make a long story short he was given antipsychotic drugs at the VA and then sent to a geri\psych hospital where he ended up being hospitalized twice in 2 1/2 weeks for overmedication. the second time he had pneumonia was impacted had ulcers on feet and elbows. When he was brought back to VA I did not even know the person he had become. He was transferred to a nursing home after he was stab lized for one night and then it was discovered his hip was broke. The ortho docs said it had been broke for 2 to 3 weeks. I guess that would have explained the agitation but he was so drugged up no one knew. My husband will never come home again. The meds are finally out of his system so he is awake but cannot speak cannot walk cannot feed himself. All of which he did before he went to respite care and the antipsychotics were started. I am sure he was stressed being someplace he did not know and then once the hip was broken he was in pain. But everyone just assumed he had agitation from alzheimers.

Teresa

September 20, 2015 1:53 p.m.

I realize that there is an increased risk of death but would one rather that the alzheimer's patient kill someone? My father is extremely aggressive at this point in his progression and I am very scared for his caregivers and my mother.

Nancy

May 25, 2014 2:50 p.m.

My father was a brilliant man - and I mean an intuitive genius in every way. He had this innate ability to understand people, situations, and problems. I truly believe (mostly in retrospect) he functioned on a cognitive level that is incomprehensible to most people because so few people in this world are gifted in this way. Establishing Dad's healthy state of mind serves to illustrate a my point in posting: the level of frustration he felt with his progressively diminishing cognitive abilities and the misguided attempts to "fix" him and medicate him so he would act "normal" (he was never "normal" and that is a subjective term anyway).
The early symptoms of my father's dementia - caused by early onset of peripheral vascular disease - were attributed to one mental illness disorder or another for years. Slowly, as dementia eroded his brain, the stigma of mental illness and misdiagnosis, as it were, crumbled his esteem for himself and, sadly, others. Finally, he ended up in the only facility he could afford (and to which he was entitled by his previous service), and by that time he was so frustrated, confused by his inability to communicate, and delusional that he was prone to violent outbursts. Immediately, my father was repeatedly subjected to chemical restraint via haldol injections and prescribed first generation anti psychotic medications at pretty high doses. I just knew it was wrong and voiced my concerns after researching, but to no avail. My sister had medical power of attorney (and is a believer in "normal"...) and blindly went along with whatever the facility staff's and doctors' course of treatment. The possibility of my dad's violent behaviors being symptoms of dementia hadn't even been considered at that point. What was discussed was "severe depression with psychotic features". So, misdiagnosed and not receiving the treatment he needed, his symptoms worsened. And the haldol injections continued because of the "danger he posed to the staff and himself - especially around shift change time. Within eight months Dad had developed painful muscle contractions, e.g., his hands curled up, his leg muscles were in constant spasm, and he developed tremors in neck that caused that constant head movement. So then he was diagnosed with Parkinson's, and finally, dementia was mentioned.
As if suffering from the symptoms of dementia wasn't tragically painful enough by itself, now, as a result of misdiagnosis, irresponsibility, convenience of the staff, the stigma of mental illness in this country, and the idea that "the doctor knows best", my father was sentenced to a slow, undignified, and painful death from the side effects of anti psychotic medication.
Organizations like NAMI are helping to remove the stigma from mental illness in this country, patient advocates encourage patients and their caregivers to question treatment choices and diagnoses, and laws governing disclosure regarding the side effects of drugs and treatments are more prevalent than ever. Unfortunately, this new level of awareness about mental illness, specifically alternative treatments for dementia patients, won't mitigate any of my dad's suffering. However, being robbed of his beautiful life has made me passionate about mental health advocacy. And in all my dad's transcendent brilliance, I know he would offer his suffering and all he missed the last 15 years of his life to save one other family from the heartbreak undiagnosed and/or misdiagnosed mental illness caused our family.
Compassionate and dedicated mental healthcare workers don't require or desire props and rewards, but deserve that and so much more. They are raising the bar in the mental health profession, which also serves to weed out mental health workers who need a career change. The stellar efforts of these professionals has changed the face of mental illness and treatment in the United States.

Mary Low

September 28, 2013 1:23 p.m.

This technique called 'validation' does work for a short time no more than reality orientation. This is not a new technique and has been used for years. As a nurse in the dementia unit of nursing home I use it everyday along with many other nonpharm methods. Medications are indeed necessary and beneficial. We have periodic medication reduction all the time in which we get the same level of effectiveness with lower doses. On some it is disasterous and puts them through series of increased anxiety with negative behaviors. Imagine how these dementia people feel. They feel anxious, agitated and acting out is the only way they cope. Seroquel and Haldol are effective medications. It takes away this anxiety and makes them feel calm and able to cope. I am insulted that it is said medications are given for the care givers/staffers benefit. Nursing home facilitys are not all bad!

Dee

May 3, 2013 8:34 a.m.

My husband is 8 years into Alzheimer's and in Stage 6. He began having dementia in his late 50's so has the early onset type Alzheimer's. He had been on Aricept and Namenda for years. Also he takes 15 mg of Mirtazapin (anti-depressant) 3 times a day...this was prescribed when he began hallucinating during the night. His behavior became aggressive and 50 mg of seroquel was added. That helped and when his aggression increased the seroquel was increased to 150 mg. This increase first caused real constipation, and then he could not urinate for over 24 hours. I read online that is a side affect of the increased seroquel dose. I took him off all seroquel and he was able to urinate. Three weeks ago we were running low on aricept and namenda and several RNs had told me he would reach a plateau where the drugs would no longer work. Well, after 8 days of no aricept, namenda, or seroquel (even with mirtazapin) he was totally unmanageable, knocking on the windows, trying to get out, etc. So, kind readers, I found there is a reason to keep him on those meds. Back on aricept, namenda, 50 mg of seroquel, and the 15 mg 3 times a day of mirtazapin he has leveled out. This was our experience and hope it helps.

lee

May 2, 2013 12:39 p.m.

My wife, with early onset(identified at age 57) was having anxiety related to hallucinations. She had no peace. She was prescribed antipsychotics at a low dose and then they were increased until the hallucinations stopped. She has more peace now. She also sleeps all night now, and I can care for her if I have 6-8 hours of respite a day. I prefer to care for her as I think she gets more individual attention, and I can manage her happiness better if I am with her one on one. I am thankful every day we can spend our time together.

Steve

April 21, 2013 10:40 p.m.

My mom is on Aricept, Namenda, Seroquel (25 mg a day, low dose, an anti psychotic) and mirtazapine, an anti depressant. She is doing much better now that her anxiety has been alleviated by the seroquel. Night and day in her behavior. Calm, more positive outlook, much less obsessive behavior. I think the Seroquel is treating symptoms that were made worse by Alzheimer's.

Denise

April 18, 2013 2:16 p.m.

My 85 year old husband's memory started to decline noticeably 3 years ago. The Dr prescribed atipsychotic drugs, I gave him one pill. Needless to say, he had a very bad reaction, right away we knew this is not the right treatment for him. 2 months ego he ended up in the hospital, and the staff Dr., who knew my husband for about 3 minutes, prescribed the same drug he was on before. Being Easter week-end, my husband was transferred to a LTC facility, where I have demanded the stoppage of this drug. Within 2 days, he looked better had no more adverse reaction. Sorry to say, his memory is declining, he is not violent, he is very placid and quiet. Happy? None of us are, we are just coping with this sad happenings in our family. By loving him, and showing him that we care, he might feel a little more secure in the facility he is in. We will not abandon him, and reassure him of this every time we visit him.

Maria

March 20, 2013 9:51 p.m.

Ativan is a benzodiazepine-in the same class of drugs as valium. An antipsychotic is a medication like Haldol,
By the way, the number one reason patients with dementia go to LCF's is that the caregiver-the caregiver-does not get enough sleep. So, dear caregivers, get another family member to help you by doing a couple of overnights so you can get some much needed sleep..

Michael

March 11, 2013 6:01 p.m.

What types of antipsychotics drugs are used with Alzheimers patients? Also would Ativan be considered an anitpsychotic?

Cyndy

March 8, 2013 5:37 p.m.

to Sandra, your mum need other medication. Please speak with her doctor, because the medication is connected bad. You can also try, when your mum drinks coffee, give her this in the evening. When your mum sleeps, please take also a nap. So you have more energy.

Susanngab

November 18, 2012 8:33 a.m.

My mum does not sleep even with medication,can you tell me how to carry on next day with no sleep

sandra

November 13, 2012 9:42 a.m.

My Mom is in a Nursing Home because a Memory care unit is unavailable in my area that takes medicaid. I was lucky to place her in a nursing home and only then by Dr's orders. I took care of her for 3 years until she began to fall. The facility is good and they do try, but again, they are understaffed. My Mom's problem is that she does not SLEEP and when she does not sleep, she sometimes hits people, not hard, but that can not be treated. They now want to place her on an anti-psychotic and from what I have read, it is not safe. My Mom is on the go, in a Jerry-chair(like a baby walker for adults) and she will go for 22 out of 24 hours. Trazadone just does not help at 50mg. I know something must be done, but I don't know what. I don't want her to be sedated all the time.. she is not in the last stages of AL where others have been. I appreaciate all the work that the CNA's do at all the NHs. Their work is hard and vastly underpaid. I try to make sure that those that take care of my Mom know how much I appreciate them because after all, they are her best friends in that place. I just need a drug that will help calm her down and let her sleep.
Karen, if you read this message, please reply with the name of the drug used to calm your father down.
My Mom is 84yrs young, is healthy, except for the AZ & I want to keep her that way. We read children's books together and put puzzles together.
Please email with any suggestions.

Linda

September 29, 2012 11:56 p.m.

&quot;Quality of life is more important than quantity at this point.&quot; I could have written the post prior to mine. And truer words were never said as quoted.

Sue

September 24, 2012 7:51 p.m.

My mother is in the late stages of Alzheimers - she is at home with her partner who is her care giver - but she is waitlisted for every decent LTC facility in our community. Memory care nursing home and regular nursing home. She was on a wait list for a memory care assisted living and by the time she had an opening - she no longer passed their intake assessment as she requires too much help to eat. She is extremely paranoid at night, hallucinates and speaks to people who are not there. She is afraid that people are coming in to do harm to her. She doesn't sleep hardly at all. Therefore - her primary caregiver gets almost no sleep. She goes to Adult Daycare several days a week for about 6 hrs a day. She has been talking about wanting to die for months now. She has just recently been put on a very low dose of anti-psychotic med. I pray that it allows her some peace at night and some break from her paranoia and hallucination. I don't believe you can redirect her away from her paranoia and hallucinations. We have tried time and time again and it frustrates her more. I don't believe that there is a behavior modification that is going to convince her that the things she sees when hallucinating are not real. It only frustrates her more when you try to behaviour modify her out of believing the things she believes are true during these episodes. This is a terminal disease like a few have pointed out. Quality of life is more important than quantity at this point.

Sue

September 23, 2012 7:37 p.m.

my mother has been treated for dementia since 2003 she was in hospital and nursing vocational rehab was put on 50 mg of trazadone and treated for uti the medicine, had a worse side effects and i will not give her them just her namenda and aricept and she is much better

belinda

September 18, 2012 7:31 p.m.

Anastasia, it takes a special type of person to be an effective and compassionate caregiver for people with dementia. I will be the first to say that nursing home staff do not get paid well enough for the important job that they do. However, your blog post sounds like you neither have the compassion or the education to continue working with people who suffer from advanced dementia. Please get out of the profession so I don't have to worry that some day you may be caring for my loved ones.

E

September 15, 2012 9:24 a.m.

As someone who has worked with dementia patients for years, I have one word of advise for loved ones. Get your cna license. Work with dementia patients for about 3 months. Then get back to me. On a daily basis, I get at least the following. Spit on, punched, pinched, scratched, kicked, screamed at, cursed at, urinated on, feces thrown at me, bit,etc..Not to mention, residents who do not understand that they can no longer walk without assistance, and continually get up and are at risk for falls with injury.Some attack other residents. Many cases, no amount of consoling, or one on one attention is helpful. They simply do not comprehend.In some cases, medication is the only effective resort.

Anastasia

September 11, 2012 10:07 a.m.

Cora,
I am saddened to hear of poor, and now, contentious communication between you and your mother's care facility. Certainly, you needto feel comfortable that she resides spmewhere that you and the staff can trust and work as a team. Before you simply move your mother to another assisted liviing facility, consult a geritrician or neurologist to clarify your mother's condition(s). With that consultation, you may find cause to research memory care facilities for your mother, not just a different general assisted living facility. Perhaps a more appropriate level of care in a dementia dedicated facility is what she needs to stabilize without haldol? As your mother ages, her abilities and needs will change. She may now need more support, and a different armosphere than general assisted living staff can provide.
Posters here have expressed frustration, but driving emotion your post is your love for and dedication to your mother. Allow that to keep driving your search and you will find better care for her.

Jenna

September 9, 2012 12:36 p.m.

We're new to this our 93 yrs old has all the symptoms of sundowning and combative the community was giving her gel of ABH? The place where she is wants here to be discharged to neurological Community of which my family is opposed for such move. Every negative she does is being written up. And recently while we were looking for an assisted living community. Where she can be moved to flatly denied her admission because according to the FL-2 report she receives two shots a day for HALDOL. Which is NEWS to us and I'm livid about it. I'm on to the next assisted living community and requested the FL-2. And requested that shot should not to be administered. I'm awaiting for the outcome next if she could be admitted to this brand new community. So help me God

cora

September 8, 2012 7:36 a.m.

I have been caring for Mom for over three years with Alz, and she is with the Exelon Patch and Namenda, in addition to other pills, but these two are working very well. I take things day by day.

Lindavuv9k4

September 8, 2012 3:48 a.m.

My mother has dementia and lives at home with me working and a helper. Without a low dose of the antipsychotic, life would be intolerable. We waited a long time until we even acknowledge that she might have the disease and finally got the diagnosis. The medication is vital for everyones nerves, the patient and the caregiver. The trick is to manage the dosage with a caring geriatrician....

H.

September 7, 2012 10:41 p.m.

As a personal care associate/medication associate(for many years) in the memory support unit at an assisted living facility, I see first hand the use and misuse of antipsychotic drugs(as well as other drugs) used in treating people with dementia. All drugs have their place and SOMETIMES these drugs are the only option. However, over the last few years, in our facility we have been fortunate to witness a reduction in the need for these types of medication since we began implementing a remarkable technique called 'validation'. This amazing communication technique is based on a book written by Naomi Feil entitled &quot;The Validation Breakthrough&quot;. The simple techniques of validation are easy to learn and take just a few minutes a day to implement. Conflict and stress can be diminished by validating elder's feelings rather than focusing on the elder's confusion. Caregivers who use this technique (instead of reality orientation) can break through the silence and pain of withdrawal and interact with compassion and greater respect for older adults with dementia. This is an essential resource for families, friends, neighbors, home health aids, doctors, nurses, social workers and long term care staff living or working with people with dementia. It will change how you view people with dementia. The need for medications will diminish and relationships with loved ones or clients will improve!!

Chris

September 7, 2012 8:38 p.m.

Thank you Don for your comment. I appreciate your statement. She is off of Aricept and takes Namenda .

nick

September 7, 2012 1:30 p.m.

We take better care of our loved ones than anyone else. If we must place our loved one in a memory care unit, one must be vigilant to see that our loved one is being properly cared for. In my opinion, nursing homes are NOT appropriate for dementia patients!

carla

September 7, 2012 10:41 a.m.

My husband will die because of dementia. He is in the late middle stage. I have had to quit my job as a nurse in order to take full-time care of him. We cannot afford an ALF and he is not eligible for a nursing home at this time. He hallucinates at times, is very delusional most of the time and paranoid often. If and when he becomes combative, I want a medication to calm him down. If that shortens his life by a bit, that's ok. That's better than my family or myself being injured by him. He's dying anyway.
I have a couple of suggestions regarding medications and placements in facilities based
on my professional experience as a psychiatric RN, working with psychiatrist and being in and out of various ALFs and skilled nursing facilities.
1-Only let a psychiatrist, geriatrician, or other prescribers experienced in working with elderly people prescribe meds. The elderly dementia patients need much lower doses. Certain antipsychotics are better than others for our loved ones.
2-Put your loved ones in a dedicated memory care unit, not a general facility. When you take the tour of a facility, given by marketing staff or admin staff, talk to the staff on the memory care unit and see if they are too stressed or have time to talk to you or at least smile and greet you. The attitude of the staff on the unit (nurses, techs, kitchen staff, maintenance staff) is very, very important.

Bonnie

September 7, 2012 9:57 a.m.

I too am a care giver of both parents 24/7. Dad has ALZ along with other medical issues associated with old age. He is on aricept and namenda and in the end stages of his disease. I have commited to mom and dad no anti psycotic drugs and am so glad I did because how can you monitor things like those silent UTI's that can be so harmful to those that can not communicate how they are feeling or what they are experiencing.

Lisa

September 7, 2012 5:28 a.m.

My husband spent two months at a “no chemical restraints” facility considered top notch, self pay; while I took charge of selling the house and getting our affairs in order. When I visited he was quite agitated and I sensed something was not right. We sat at the end of the hall and watched his room. I figured out was going on. Throughout his day, he would return to his room to find other residents sleeping in his bed, his clothes missing, his roommate using his electric razor. The staff called this “shopping”! Added to this the staff would “wake him every hour” at night (the law) to make sure he was still alive! He was unable to make sense of others behaviors, became sleep deprived, distressed, agitated and angry. I feared he would lose control and the police would be called. He would end up charged with assault and jailed. (check the admission packet fine print about this) I never thought to put funds for “bail” into our financial planning.

Jenna, you made some good points about the long term/nursing home staff's issues. As a caregiver who was hospitalized for an emergency medical problem, my wife was put in a nursing home by the hospice service. After 4 days of their lack of attentive care I was able to leave the hospital and take her back home. She was dehydrated, and starving for food because the aid's did not have time to feed her with their other patients - after all she was dying so they thought. She wouldn't voluntarily open her mouth or swallow over a tablespoon of water - AD symptomes I have dealt with for 11 months. The aid said that was how they were trained to tell if someone was shutting down to die, so they had other people to feed and my little lady was being left to die like a POW in a concentration camp. Now, this facility has very good reports however left me wondering how many loved ones are over medicated or starved to death when the cause of death is listed as the disease?
Lessons learned - LTC facilities staff can not be expected to take much time feeding patients that are helpless to speak or feed themselves. Hospice PT's well they are dying so no big deal. CNA's and aids may have 8 to 15 patients to oversee, and it is impossible for them to feed a pt that takes an hour to eat/drink each meal. Hire or get volunteers to feed your loved one that is virtually helpless.

Gary

September 6, 2012 7:47 p.m.

I'm 100% in agreement with Sandy. My husband passed away from Alzheimer's 4 mo. ago. He had been diagnosed 4 years previously, and I cared for him up until he ran off. By then, he was entering the final stages of Alzheimer's, and I could no longer control him, so I placed him in a memory care facility. He was, at that time, taken off Aricept and Namenda, and placed on Haldol, a antipsychotic. He in no way improved, being non-verbal, incontinent, aggressive. However, due to the Haldol, he was incapacitated enough to be able to stay in the facility without causing injury to someone else. He died 3 mo. later.
We must remember that Alzheimer's is a terminal illness. There is no improvement, only decline. The late stages are a nightmare for both patient and caregiver. My husband would have hated living as he was, and it was a blessing to both of us that he passed away. If Haldol hastened that, then hooray for Haldol. We had 42 good years of marriage, and, thankfully, there were only a couple of bad years, not 10 or more, as can happen. If you haven't cared for a late stage Alzheimer's patient, then, please, learn more about it.

Pat

September 6, 2012 6:58 p.m.

To Nick regarding Namenda. My 74 yr old wife has Alzheimers and is also roux-en-y gastric bypass. In our recent experience the titration starter was in the third week when she experienced uncontrollable diarrhea. It turns out that the drug does not completely metabolize in 24 hours and subsequent doses accumulate to an unsafe level in addition to an increase in dosage strength. The Doctor that prescribed the Namenda did not return my calls. The pharmacodynamics of Namenda was researched by a Pharmacy student and provided reprints of the search. My wife is off the drug and will not be subjected to this again.
Every patient reacts to drugs in their own way. As others have learned it is wise to research every drug on your own. Doctors are still &quot;practicing&quot; medicine.

Don

September 6, 2012 6:33 p.m.

My husband has been &quot;sort of&quot; diagnosed with the possibility of having the early stages of Alzheimer's Disease in 2009.
A year previous to these medical tests, my husband displayed alarming states of forgetfulness, necessitating seeking professional advice, thus the tests and the results.
We were counseled to try one of the current medications for Alz Dx, which would delay the progress for a few months, but not stop it.
I opted not to try the medications,and have been trying to keep my husband busy most days.But because he forgets, I have to be with him 24/7. Acupuncture treatments help a lot in maintaining his general well-being. We walk at least four times a week.I try to cook most days, to ensure that what we are eating are nutritious.
For 18 hours everyday, our conversation is mostly his repetitive questions and my repetiive answers for matters of the past that he only remembers, and the emotional outburts that he displays.
Hopefully I can continue doing what I am doing now in managing my husband's health situation. But there are times, though, that caring for a loved with this problem is so exhausting to one's spirits, as there appears to be no light at the end of the tunnel.

Paola

September 6, 2012 5:15 p.m.

I must agree with all those who have commented who are working very hard in this field to address an overwhelming number of needs with never enough available staff. One cause of this shortage does seem to be the lack of caregivers who want to work with dementia patients or who have the talent and expertise to do even an adequate job. However, the other cause for this poor staffing ratio is corporate owners who are using the profits from your loved one's estate to build more facilities than they can adequately attend to. My mother is currently in a healthcare facility owned by Trilogy Health Services. They currently own over 70 facilities and are building 6 more as I write this, yet the dementia unit is always understaffed. Trilogy continuously advertises activity programs that do not happen. Their 'art program' for example is scheduled for 3 months of the year in spite of all the current research that states how important art is for reaching alzheimer's residents. Often when I visit my mother the lights in the activity room are not even turned on. In 14 months I have seen my mother participate in one activity that was actually in progress when I arrived: a word search puzzle printed so small that she developed a headache and started to cry because she thought she had to finish it. Not one staff member was available to help her: they were collecting residents and seating them for noon lunch at 10:30 in the morning!

Lynn

September 6, 2012 4:54 p.m.

They may not be right for everyone, but antipsychotics really helped my mother-in-law (who has early-onset Alzheimers) feel safer. She was having hallucinations and scared all the time. She would hide under/behind things. She is much more relaxed now.

KJ

September 6, 2012 4:08 p.m.

Thank you for this research. My Dad just died two weeks and this is still very fresh in our families mind. During the last few months of his dementia his daily care grew too much for home care and we reluctantly placed him in nursing home care. He was prescribed anti psychotics to help the staff. We couldn't get them to stop and moved him to another nursing unit in another state (with another sister). Same thing occurred then. We had no trust in the medical community prescribing medicine to help him when he was scared, anxious, etc. I was outraged at his treatment. I expect in 10 years this time will be looked at as the dark ages of dementia care and drug constraints will be looked at as barbarically as physical constraints are viewed now.

Laurie

September 6, 2012 3:35 p.m.

Kimberly, I know where you are coming from, alzheimer's is ONE of the dementia's..my wife had Pick's, like lewy Bodies, it is a much more rare form of the dementia's, as soon as we discovered that she had Pick's instead of alzheimer's, the Dr. took her off of Aricept, and didn't even say why, I pursued it and did not get a satisfactory answer, instead he put her on a drug, that when I got it filled...I read the warnings,(I do that with all Med) and I also go on line and get all the info I can get (which by the way...we absolutely should get to read THE BLACK BOX WARNINGS) but this certain drug said do not give to people with dementia..it will shorten their lives..I couldn't believe that a neroligest,that I regarded highly, would do that... listen folks...no matter what dementia your loved one has...RESEARCH, RESEARCH, RESEARCH....don't take everything for thr gospel that tour Dr says..a lot of them don't know what they are talking about...and when they whip out their little blackberry and start researching, DUH, find a Dr. that know's...and has compassion, fire your other one, and get one that cares, and will be very up front and honest with you to the best of their ability..but make sure that ability is in the dementis area your loved one is in....I did not give my precious lady that drug. I admire each of you that are taking care 24/7..every 5 minutes...also take a break, it is so important...hard to do, but very important.

Dave

September 6, 2012 3:20 p.m.

My wife takes Namenda. Helpful or not? Thank you

nick

September 6, 2012 3:00 p.m.

I agree with Sandy. After we gave our mother help with a medicine, her life improved so much because of less anxiety. Put your self in that person's shoes - would you want to be scared all the time? Over-medication is not the answer. But it is silly to think a nursing home cannot use any medicatons to help their residents who have that extreme anxiety or extreme behavior. Live with it 24/7 and you may change your mind.

Martha

September 6, 2012 2:38 p.m.

It is important to recognize that certain behaviors will not change with use of anti-psychotics. Yelling, wandering, and resisting are not psychotic behaviors. It would be helpful to point out what are such behaviors that might warrant consideration of those drugs.

Beth

September 6, 2012 2:29 p.m.

What a load of horse hocky. Just what we need, the government to tell us how to care for our loved ones because they have so much experience. Come and live with me for a month or two, caring for my wife who is slowly dying of Alzheimer's disease. We are not statistics to be manipulated to promote an agenda. I hate this disease but I hate those who have studied it but have no real exparience to enhance their opinions.

Larry

September 6, 2012 2:09 p.m.

Thanks for sharing Dr. Phillips' comments with us. My dad has a wonderful psychiatrist who has patiently explained to us throughout this dementia process--that my father's behavior can be managed most of the time through controlling his environment. Sometimes that means providing reassurance, agreement, silence, change of scenery, or just listening to him. For those times when the behavior is spiraling and unmanageable for whatever reason, we have a low dose medication that we can give to calm him. So far that medication has been used only about once a month. Thank God for doctors who take the time to educate caregivers.

Karen

September 6, 2012 2:08 p.m.

I work in a dementia facility and have a mother in the early stages of Alzheimers. I typically care for over two and a half to three dozen patients during my nursing shifts. I am well trained in dementia care and have the deepest regard for our residents and their families. Antipsychotics are used for a reason. Its almost always about the safety of both the staff and other residents. My staff, nursing assistants, each care for seven or eight patients at a time. Unless you have some magical box from which this nation can pull more money to increase our staffing ratios towards that one on one (or even one on three!) individualized 24/7 compassionate care you advocate, the dream is unrealistic. We do a fantastic job and our training has improved dramatically over the last decade. We are successfully managing many patients with caring interventions!
Still, when staff are being hit, even bitten, I have no problem with a physician's choice to quell the behaviors via prescriptions. Dr. Phillip's, come join our floor and put in a few dozen 8 or 12 hour day dressing, toileting, feeding and redirecting. Then you may agree that a compromise is knowing being chosen. My staff's safety matters. I will always advocate for anticipating needs and managing our patients in ways that support their emotional security and full comfort. Recognize that sometimes antipsychotics and anxiolytics are the only affordable tools for care providers. Where do you suggest we get the funding to do otherwise?

Jenna

September 6, 2012 2:06 p.m.

I remember how mothers were blamed for the behavior of their children afflicted with schizophrenia in the 1950’s. The National Institute of Health did research on schizophrenia by recruiting several families to live in their hospital and be observed over one year. Thanks to the NIH doing research on schizophrenia it was proved the mother was not to blame! The medications haldol and thorazine emerged as first line of treatment and were given to patients in mental institutions. As a result of those drugs; institutions were emptied. Whatever happened to the ex-residents! Did they all die due to the meds? The realistic view would seem to be that co-morbidity of other medical conditions in the older patients is what brings death. In such situations there is need to treat physical and mental pain. It is time for well designed research on the medicines we have …not what we hope to discover. Who knows maybe simple pain meds would be the best calmer? What is the optimal dosage and regimen of thorazine for dementia? Then and only then, CMS can appropriately remove psychotropic drugs from their prescription list for dementia.

Marie

September 6, 2012 1:33 p.m.

A close relative had delusions that someone was trying to kill or harm him or our family. He did not get any sleep checking to see if the doors were locked &amp; that no one was outside.
After trying several different medications, the doctor prescribed a very low dose of abilify to try. Abilify is a drug that is not approved for dementia! It was a miracle - he had no more fears of being harmed!
I feel that all medications given to dementia patients have to be monitored closely by loved ones/caregivers until one is found to alleviate or stop the symptoms which are troublesome/disturbing.

carla

September 6, 2012 1:18 p.m.

My Aunt had LBD LEWY BODY DEMENTIA&quot; this dementia is fatal and Antipsychotics actually were found to make her symptoms much much worse and unbearable for her to live with. Please, please, please educate yourselfs on this very dibilitating fatal Dementia and what these drugs can do for the people who suffer from this horrible disease. Most Docs and Nurses dont know about Lewy body Dementia so please share this info. For more info about LBD please go to LBDA.ORG and learn. Thank you soooooo much as this disease needs global awareness!!

Kimberly

September 6, 2012 12:53 p.m.

My husband has Alzheimer's and the doctor calls it mild but from what I experince I wonder just what mild means. From the report by Angela Lundi I am thankful for the information and the comments posted.
Only the caregivers know. God bless us all.

Shirley

September 6, 2012 12:40 p.m.

I agree with both sides. My husband has dementia and has for 14 years, and thank goodness for the drugs that have helped him and myself as the caregiver to continue to take care of him at home in the evenings and on weekends. We also need to be the advocate and make sure we understand the drug and know and be aware of the side affects. I have learned thru this process to be far more involved and comfortable with challenging the doctor on some of these prescribed drugs. The dr. really doesn't see the patient 24/7 as the caregiver does. I'm amazed at how some of the specialists seem to think they know my husband's behavior and really aren't that open to listening what really takes place on a day to day basis. It takes a lot of research and being on top of things in an already difficult situation, but in the long run it's best for all.

Judy

September 6, 2012 12:32 p.m.

I agree with you Sandy 100% they have no idea what it is like to deal with someone with dementia 24/7. My mom needed those medications for my dad to stay sane.

Diane

September 6, 2012 12:26 p.m.

I must say &quot;amen&quot; to Sandy and Steve. And I also second the observation that those who dispense advice most likely do not act as caregivers 24/7....or they would not have time for such careers.

Carolyn

September 5, 2012 10:19 p.m.

Just a &quot;soft&quot;comment to Sandy, and other caregivers... As Dr John Richard Taylor PHD , a &quot;student of memory loss&quot;as &quot;myself&quot;,he states... &quot;We are not 1/2 empty&quot;...&quot;We are not 1/2 full&quot; &quot;We are Whole people&quot; We will end up a shell of our former selves. We need &quot;enabling&quot; &quot;not disabling&quot;.
I believe Angela and Dr Phillips may be trying to help people with this devestating disease to keep the &quot;faculties that are still available&quot; to us, and not have them end our lives earlier than they should....because of medication. These medications &quot;alter moods&quot; and have extreme side affects. They can inhibit the small amount of &quot;cognitive thinking&quot; there may be left.
My family personally experienced it with my father,when his&quot;Haldol&quot; was discontinued....
This was over 25 years ago...when doctors didn't know what they were dealing with, but it's not the dark ages anymore. I am stating, and have documented already,I am not to be given drugs of that sort....because I want to and have a right to die of natural causes and not medication side affects.Persons with cognitive loss, and early dementia, and their families need to sit down and plan these things, there is no guilt then...on anyone.
Angela is an extrodinary person, we have had the privilage of meeting her and spending time with her, she is a wonderful advocate for persons with cognitive loss and dementia.As I have becom

Catherine

September 4, 2012 10:13 a.m.

Angela:
Normally I agree with you, but I think Steve is right. Most care facilities and families try to meet the unmet needs of the patient, but sometimes they just can't due to the progression...and you should know that. And yes, families who have their loved ones facilities will come in and demand, but caregiver's who are with their spouses 24/7 will understand the need for drugs to help alleivate some of their anger or the anxiousness.
Your comments that for every 53 patients, one will die..for every 25 patients that benefit from antipsychotic drugs, one will die. They all will die of this disease it's just a matter of when, and to be frank, caregivers who have been living this illness for many years...this is a blessing both for the patient and the caregiver.
Medical experts can say all they want about they think we should do, but when you are living with someone day in and day out, trying to meet their every "need", as your blog suggests, but fail time and time again, drugs may be necessary.
It's obvious you have not lived with someone 24/7 trying to meet their needs!
Sandy

Sandy

September 1, 2012 9:46 a.m.

I sent the FDA a complaint about this after my father died. The Dr's administered Risperdol over 7 years to my father and he died because his muscles became stiff and he couldn't swallow any longer. Muscle stiffness is a side effect for this group of drugs. It is an anti-psychotic and shouldn't be used for over 2 or 3 months. I asked many times if we could take him off and they always told me no. I later found out that it was an off label use.

kim

August 31, 2012 10:15 p.m.

I work in a nursing home where we work hard at being compassionate. We try non-medicinal approaches first. But ther are many times when we need a medication to help manage behavior. It doesn't treat the dementia, psychosis etc-it sedates them enough for life to be manageable In an institutional setting.
Yes, more staffing, better approaches, etc might diminish this need a bit. I do think that antipsychotics can easily be overused but they are not evil. They do help us manage and I don't know of a better drug alternative.
Articles like are taken by families to say we shouldn't be using these drugs at all. Even when we are using them responsibly, they come in after reading something like this and demand a drug stopped. Too often we then have &quot;hell&quot; to pay when behaviors spin out of control again.

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